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  1. The Anatomy of a Hospital Go-Bag

    October 2, 2014 by Andrea
    ©Depositphotos.com/mac_sim

    ©Depositphotos.com/mac_sim



    A couple of weeks ago, a new show called The Red Band Society premiered on Fox. Following the lives of a group of teenagers who reside in a hospital, this show inspired this week's blog post: How to prepare for your SCD child's hospital stay. 

    As you know, a crisis can crop up without warning and require a trip to your nearest medical center. And if you're not quite prepared for that to happen, you may find that you and your child are stuck in a hospital room for days without changes of clothing, toiletries, schoolwork and work necessities, or any form of entertainment, among other things. So, what should you pack? Check out our suggestions here: 

    The Anatomy of a Go-Bag 

    1) Cell phone and charger. Your cell phone can, of course, have multiple uses: a phone (naturally) and a source of entertainment, such as music. Be sure to throw some headphones in the bag, as well, so that you and your child can listen to music without disturbing anyone else who may be staying in the room.


    2) Laptop. If you or your child has any work that needs to be done, this will definitely come in handy. You can also use your laptop to jot down any questions you may have for the doctor and to keep you and your child occupied (think Netflix). 

    3) Toiletries. You may be staying for a few days, so be sure to bring all essentials, such as toothbrushes and toothpaste, contact lenses and cleansing solution, deodorant, facial cleanser, hair supplies, regular prescription medications, etc. 

    4) Changes of clothes. And underwear. Plan to pack at least three days worth, and then, if your stay ends up lasting a little longer, you can always run home and pick up extras. 

    5) Fun Stuff. You may get sick of only watching Netflix and the hospital TV, so make sure you pack other entertainment options, such as board games, card games, books, and toys. Speaking of toys, it's also a good idea to pack a few of your child's favorite stuffed animals for bedtime. A stash of your favorite snacks and a few water bottles are also suggested. 

    Don't be caught off guard -- fill your go-bag with these items, keep it in your car, and you'll be ready for whatever comes your way!

    Do you have a go-bag ready? What did you pack in yours? Tell us in the comments below! 



  2. How to Advocate for Your Sickle Cell Child at School

    May 21, 2014 by Andrea


    Last month, a teacher at a school in Washington, DC was accused of ignoring the plight of one of her students with sickle cell. According to an ABC News report, the 9-year-old child told his teacher that he was feeling hot and unwell. The teacher then told him to get some water and sit back down and do his work. He still didn't feel well, and kept his head on his desk; his teacher just kept telling him to get back to work. 

    Three hours later, he still didn't feel right, so he walked out of class and went to the office for help. He was sent home on a bus and by the time he arrived at home, he had a fever of 105 and had to be rushed to the hospital. 

    The child's parent says that the school was aware of her son's battle with sickle cell, but there's no indication that there was an actual plan in place for his care at school. So, how can you help ensure that the same thing doesn't happen to your own child? Take the following steps: 

    1. Meet with your student's teachers, administrators, special education staff, and counselors to draw up a 504 plan. A 504 plan ensures that your child receives the free and appropriate education he or she is entitled to by accommodating the student based on any physical or mental disabilities. A 504 plan can include assistance, such as preferential seating, rest periods, extended time on assessments, medicine administration, and the ability to drink water during class, among other options. 

    2. Find a professional tutor. For those times when your child must be admitted into the hospital during sickle cell crises or other complications that may arise, make sure your student is still able to stay on top of his or her education with the help of a tutor. Many hospitals have licensed educators on staff, who will work with your child's teachers to plan assignments, provide instructional time, develop progress reports, and more. Ask about the school program at your hospital to find out more. If your child is recovering at home, rather than in a hospital, reach out to the school for information on finding a homebound teacher. 

    3. Keep the lines of communication open. Request regular updates from you child's teachers about progress in class and whether or not they've noticed any periods of pain, fatique, overheating, etc. taking place in the classroom. When you notice a change in your child's illness, be sure to inform teachers about it, as well. The CDC also recommends building a relationship with teachers when your child is feeling well: "Keeping in contact when a student is not ill helps teachers to tell the difference between a student's typical behavior, and performance that might signal health, learning, or behavioral problems." 

    How have you advocated for your child in school? Comment below with any other tips you'd like to share!



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  3. Resources for Parents of Children with Sickle Cell Disease #SickleHope

    December 13, 2013 by Eric Coles

    Resources for Parents of Children with Sickle Cell DiseaseThere are so many resources available for parents with children of Sickle Cell Disease that can lead to a better understanding of the disease and to parents connecting with appropriate, available resources.

    Having a child with a chronic disease can cause parents to have feelings of hopelessness and confusion.  Especially since Sickle Cell Disease is a genetic trait, parents may feel responsible for their children's illness.  Support groups ensure that parents receive the emotional and mental assistance that they need and the knowledge that they are not alone.

     

    The resource list is state by state and national.

    State by State Resource Guide for Parent information and including Parent Support Groups from the CDC - National Resource Directory on Sickle Cell Disease 

    From the Official Journal of the Academy of Pediatrics - Newborn Screening Fact Sheets 

    North Carolina Department of Health Services - Sickle Cell Syndrome Program 

    American Academy of Pediatrics - Sickle Cell Disease Resource Kit  

    The Sickle Cell Clinical Program at The Children's Hospital of Philadelphia 

    Sickle Cell Disease Association of America 

    American Sickle Cell Anemia Association 

    The Student Athlete with the Sickle Cell Trait 

    Sickle Cell Kids 

    The Child with Sickle Cell Disease - A Teaching Manual from the Texas Department of Health

     

    National Heart, Blood, Lung Institute - What is Sickle Cell Anemia?  

     

     


  4. Benefits of Exercise for Children with Chronic Health Conditions

    November 18, 2013 by Eric Coles

    Benefits of Physical Exercise for Children with Chronic Health ConditionsFor children that have special needs due to a chronic health condition, exercise can be challenging.  With colder months, the chances of these children even being able to get out into the fresh air is rare.  There is no dispute that all children need social, mental and physical balance in their lives and this is even more important for those children that may have restrictions on activities due to a chronic health condition.

    Benefits of Exercise for Children with Chronic Health Conditions:

    • Can improve muscle strength, coordination, and flexibility.
    •  Regular exercise builds endurance and cardiovascular efficiency
    • Enhances balance, motor skills and body awareness.
    • Exercise improves mood and helps children cope with anxiety and depression.
    •  Will boost their self-esteem.
    •  Can give the child a sense of accomplishment.
    • Exercise increases appetite and improves quality of sleep.
    • May see a decrease in secondary health complications like obesity, high blood pressure, low HDL (“good”) cholesterol and diabetes.


    How to Overcome the Challenges:

    Physical challenges can be a difficult barrier to overcome.  Many parents believe that because of their disability, their children cannot be physically active, which is not necessarily true. This lack of physical activity may not only lead to obesity, but can lead to secondary health problems as well.to many other numerous health problems as well. (NCHPAD)

    Aquatic Activities for Children with Chronic Health ConditionsParents and caregivers can work with physicians, physical therapists and other healthcare professionals to develop a program that is appropriate for your child and their diagnosis. Covering the basics of physical activity guidelines within your child's range is important.  

    Touching base with local hospitals, organizations and organizations like the YMCA can be a good source of exercise programs that are tailored to children with special needs.  Parents will need to do the legwork -  while 15% - 18% of children and adolescents in the United States have a chronic condition or disability, opportunities for their participation in fitness and activity programs, whether for leisure, recreation, or competition, are limited.  

    Find out what physical activities are possible for your child and their condition.  Children with Sickle Cell Anemia have a difficult time with distance activities but may find aquatic activities a source of fun and better health.  Parents should monitor the activities to ensure that children don't overdo it, rest when tired, and drink plenty of water. (CDC)

    Avoid cabin fever for the winter months and find some activities that work well indoors: making your child a sous chef, make music and have a dance party, check out some of the exercise-oriented video games. However you can get your children moving will benefit them (and you!).

    Xickle RBC-Plus™ is the perfect supplement to take when you are doing vigorous exercise and worried about the possible after effects.  It is effective for all ages, but specially formulated for individuals under the age of 18.

    Check out Xickle today!


    Additional Sources and Resources:
    http://www.cdc.gov/pcd/issues/2013/12_0283.htm

    http://www.ncbi.nlm.nih.gov/pubmed/19046177

    http://www.choa.org/child-health-glossary/k/ki/kids-and-exercise_kh_parent

    http://www.med.umich.edu/yourchild/topics/chronic.htm


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